Evidence map›Paper›PMID 34422276›Full record

ArticleEuropean journal for person centered healthcare2019

Participant experiences with a new online modified-Delphi approach for engaging patients and caregivers in developing clinical guidelines.

Courtney Armstrong, Sean Grant, Kathi Kinnett, Brian Denger, Ann Martin, Ian Coulter, Marika Booth, Dmitry Khodyakov

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Article in European journal for person centered healthcare, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers.

0numbers the graph read from it
0cells of the map it votes in
10citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

10 citing papers in PubMed.

  1. Review
  2. Stakeholder input on the CAHPS ambulatory surveys.Journal of patient-reported outcomes · 2025
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

8 authors.

Courtney ArmstrongPolicy Analyst, RAND Health Care, RAND Corporation, San Francisco, CA, USA.
Sean GrantAssistant Professor, Department of Social & Behavioral Sciences, Indiana University Richard M. Fairbanks School of Public Health, Indianapolis, IN, USA; Adjunct Behavioral/Social Scientist, RAND Health Care, RAND Corporation, Santa Monica, CA, USA.
Kathi KinnettSenior Vice President, Clinical Care, Parent Project Muscular Dystrophy, Hackensack, NJ, USA.
Brian DengerCollaborative Programs Administrator, Parent Project Muscular Dystrophy, Hackensack, NJ, USA.
Ann MartinDirector, The Duchenne Registry, Parent Project Muscular Dystrophy, Hackensack, NJ, USA.
Ian CoulterPolicy Researcher, Adjunct, RAND Health Care, RAND Corporation, Santa Monica, CA, USA.
Marika BoothStatistical Analyst, RAND Health Care, RAND Corporation, Santa Monica, CA, USA.
Dmitry KhodyakovSenior Behavioral/Social Scientist, RAND Health Care, RAND Corporation, Santa Monica, CA, USA.

Funding

Patient-Centered Outcomes Research Institute ME-1507-31052
6 · The paper itself

Abstract

backgroundPatient engagement in clinical practice guideline (CPG) development has increased significantly in recent years. However, only a few patients and caregivers join CPG development groups.

objectiveTo describe participant experiences with a novel online, scalable approach for patient and caregiver engagement in CPG development.

designWe developed and tested the RAND/PPMD Patient-Centeredness Method (RPM), a novel online modified-Delphi approach to patient engagement in CPG development that consists of an optional idea generation round and two rating rounds interspersed with an online discussion round. SETTING AND

participantsUsing the online ExpertLens™ system, we ran 2 concurrent panels of patients and caregivers of individuals with Duchenne Muscular Dystrophy (DMD).

main outcome measuresWe surveyed all 95 panel participants about their participation and satisfaction with the process. We also conducted telephone interviews with 25 participants.

resultsParticipants expressed satisfaction with various ExpertLens™ features, noting that the system fostered lively interaction among them. Panelists also appreciated participating in an educational, interactive and convenient discussion forum that allowed them to share their opinions on the importance and acceptability of different recommendations. The RPM was viewed as empowering by patients and their caregivers who felt it would be useful for CPG developers. DISCUSSION AND

conclusionThe results of our study show the overall participant satisfaction with a novel, scalable, online approach to engaging patients and caregivers in CPG development, which allows them to share their perspectives and lived experiences using a rigorous, systematic and iterative way that is similar to how clinicians provide their input.

Indexed as

Duchenne Muscular DystrophyExpertLens™guideline developmentlived experience of illnessModified-Delphi methodonline engagementpatient/caregiver perspectivespatient engagementperson-centered healthcareRAND/PPMD Patient-Centeredness Method

Identifiers

PMID34422276
PMCPMC8375559

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.